Chris Anselmo

@chris-anselmo | contributor
Chris Anselmo lives in the Boston area and is a 2016 graduate of the MBA program at Boston College. Chris has been dealing with the effects of Miyoshi Myopathy (a form of dysferlinopathy) since the age of 21. In his spare time, Chris loves to write and root for the Boston pro sports teams. To read more from Chris, visit his blogs at Sidewalks And Stairwells and transitions.mda.org/profile/chris-anselmo.
Chris Anselmo

Dealing With Dysferlinopathy: How 'Unbroken' Motivates Me

There are days when it is hard to tell whether dysferlinopathy affects me more mentally or physically. One of the most overlooked aspects of a muscle-wasting disease is the unrelenting mental grind. I find myself having to constantly adjust to my weakening body. I worry about whether or not the next step I take will lead to a fall, or whether a coffee shop where I’m supposed to meet someone has chairs I can get out of. This disease is always muddling my mind in some way, interfering with my thoughts. There are times when my circumstances get me down, and I’m in need of something or someone to snap me out of my funk. I expend so much energy picking myself up (figuratively and, unfortunately, literally) that it’s easy to fall back into the convenient trap of sulking. Every once in a while, however, inspiration strikes when I least expect it. This time, it happened to be from a commercial. I remember where I was the first time I watched the trailer for “Unbroken,” a movie about the extraordinary life of Louis Zamperini. I was sitting on my couch at home, watching something mindless, when the trailer came on. For whatever reason, I was drawn in immediately, and when I finished, I went online and watched it again. Then I went and bought the book on my Kindle and devoured it within the day. If you are unfamiliar with the story of Louis Zamperini, I highly recommend learning more about his life. Stop reading this if you have to and Google his name. His life story is applicable to anyone going through hardship. “Unbroken” chronicles Zamperini’s extraordinary life — from his rough childhood, to competing as an Olympic runner, to being a prisoner of war in Japan during World War II. In the book, we also learn about how he fought and conquered his demons after returning home from the war. There was one part of the trailer that spoke right to my soul. It was the difference between thinking to myself, “I might watch this someday” to “I need to buy this book immediately.” In the scene, a Japanese prison guard demands that all the prisoners in the camp — more than 200 of them — punch Louis in the face. The evident tension as the first prisoner anguishes over having to punch his friend is both captivating and heartbreaking. “Come on! Hit me!” Louis screams these words at the top of his lungs in order to ensure that his friends punch him with the necessary force. Otherwise, they would receive the same punishment. He proceeds to get hit, over and over and over. By the end, he is virtually unconscious and unable to stand. I think about what I have to deal with on a daily basis, and it doesn’t even remotely compare to what Zamperini had to endure. This event is one of countless indignities he faced as a prisoner. From a perspective standpoint, my issues are insignificant. However, after watching this scene, I thought about my own circumstances. In its own way, dysferlinopathy punches me in the face day after day. I can never take a day off from this disease — muscle weakness is as much a part of my life as eating and breathing. It grinds me down, exhausts me and tests my threshold for pain. Right when I pick myself up after the latest punch, it knocks me off my feet again with a ferocious blow. I am so thankful that I encountered this trailer. I often use Zamperini’s story as motivation when times get tough. This scene and the accompanying message is an important one for anyone to internalize. We all take punches in life every day, in one form or another. If I’ve learned anything from my disease, it’s to take pride in persevering. To quote Rocky Balboa (in another scene I could easily have written about), “It is not how hard you hit, but how hard you can get hit, and keep moving forward.” Some days are worse than others, but by standing to take the punches of life every day, I know I am defeating this disease. Because someday, dysferlinopathy will throw its last punch as it withers away into irrelevance. If I stand my ground and get up, no matter how many times it takes, I will see that day. Follow this journey on Sidewalks and Stairwells . The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Chris Anselmo

To the Boy Who Stared at Me After I Fell on My Crutches

Of all the times, why did you walk by me at that moment? I had only bought my crutches two weeks prior after months of denial about my deteriorating condition. I’ve had them for two years now, but on that night, I was still getting used to walking around with them. They represented a disability I could no longer hide, and I wasn’t used to that. I was self-conscious enough before you stared at me, kid. I was already watching strangers’ faces when they walked by me, trying to determine if they were staring at me like I was an exhibit at the World’s Fair. When they looked too long at my crutches, I would glare at them menacingly. I showed them my tough guy face. Underneath, though, I was fragile. I was sad. The night I fell on my walk home you were several feet behind me, walking hand in hand with your mother. You came up to her waist so you couldn’t have been more than 3 or 4. What you saw, and what you couldn’t take your eyes off of, was me tripping over a brick. You have to watch out for bricks; they blend into one another yet sneak up on you without warning. You saw me trip and stumble into the wall of the building I was walking next to. I fought gravity as hard as I could to stay upright, but I lost. Someday you’ll learn about gravity. By the time I got up with the assistance of strangers, you had just walked by me. Your mother kept walking but you — you stopped to turn and stare at me. She basically had to drag you to keep going. What did you see? You saw a young man struggling to come to grips with his new life. You saw someone who was vulnerable, who could no longer make sense of what has become of his body. You saw someone who was afraid after falling. Look, I know you’re a kid, and you don’t see too many people fall for seemingly no apparent reason. You may have seen people fall in an action movie, or in a soccer game on TV. But I bet you probably never saw someone take a step and fall into a wall before. But your stare hurt. It doesn’t matter if the stare is from an adult or from a kid. Your stare was still enough to remind me that I am different now. You confirmed my gnawing fear that I had become an outcast in an able-bodied world. That day, you made me realize that I couldn’t go back; that I couldn’t go back to being strong and energetic, and, most importantly, anonymous. I couldn’t go back to my past life, one where I stepped over jagged bricks without thinking twice. That life is over no matter how hard I want it to come back. Your stare hurt, but I’m not mad at you. If I let each and every stare affect me, you would have probably seen me roll over into the alley, withdrawing from society like I want to do every so often. You’re young. You’ll learn soon enough that turning around to stare at a stranger isn’t a very nice thing to do. I know it was an innocent mistake. I’m not going to curse at you or tell you to turn around. I’m not going to wish harm on you or hope that someday you find yourself in my shoes, a young soul in an old body. You just caught me at a bad time, kid. But I hope, when your eyes were fixated on the curiosity of my embarrassing situation, you saw me get back up. When you looked back, I hope you saw me looking forward. I sincerely hope you never have to encounter disability or any health challenge. But if you do, do me a favor: don’t look back. Not because it’s rude — I told you, we’re past that, and I’ve already forgiven you. What I mean is, make sure that you keep your eyes forward, focused on the future at all times, on the open doors that can only be seen when you are looking straight ahead. You are going to stumble and fall in life, and it’s going to hurt. Doors will close on you. I learned the hard way how to respond, through trial and through many errors. I don’t want you to go through any of that, so please listen to my advice. If you turn around and focus on what has already taken place in your life, if you dwell on the skeletons of broken dreams and frustrations and pain that might one day litter your past, you’re wasting your time on something you can’t change. You may not know what any of this means now, but you will someday. Falling happens to everyone. And when it does happen, I hope that you learn how to keep your eyes focused on what is ahead of you, not behind you. Looking forward is why, despite the embarrassment and the sadness, I wiped the blood off my hands and walked home. You see, it wasn’t too long ago I was your height and age. I stared at strangers who looked different, too. But here I am, 25 years later, disabled, fighting the stigma of disability, both physically and emotionally. But if you look forward long enough, you will find the purpose to your life. Surround yourself with people who love you, like your mother who was holding your hand, and you can bear anything. Time goes by too fast to look behind you. So promise me that no matter what happens to you, even if you become the stranger that little kids stare at because you’re different, you will keep your eyes forward. Don’t look back, kid. Don’t ever look back. Follow this journey on Sidewalks and Stairwells . The Mighty is asking the following: “Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Chris Anselmo

Man With Dysferlinopathy Panics When Asked to Get Out of Seat

“Everyone get up from your seats and find a partner.” “Oh no. Oh no,” I thought. “Keep calm.” It was barely an hour into the third day of my business school orientation at Boston College. Sitting in the warm auditorium on the fifth floor of Fulton Hall, I was listening anxiously to our guest speaker talk to us about how to have a successful internship interview. Then, out of nowhere, he instructed us to find partners and practice the techniques he had been teaching. All of a sudden I had to confront two of my biggest fears — forced interaction with strangers (in this case classmates I didn’t know yet), and getting up out of a chair. Auditorium seats are especially difficult for me because the floor is usually slanted and the chairs are cramped. When I sit down, I sink into the cushion, which adds resistance when I try to get up. With a neuromuscular condition like mine, dysferlinopathy, getting out of any chair is a cumbersome, deliberate task for me at this stage of my disease progression. It takes all of my strength and all of my focus. At this moment I was faced with a dilemma – do I get up and try to walk over to someone, sit down in a new chair and repeat the process over and over again until I am physically exhausted? Or, do I stay in my seat and hope people come to me if they notice I don’t have a partner? If I do stay, will anyone come over to me, or will I remain alone in the corner, forced to mock interview myself? The thought of being alone brought back memories of childhood, back to gym class when people picked teams and I dreaded being the last one chosen. Suddenly my irrational childhood insecurities came flooding back. I’m going to be sitting alone in the corner of this room, the only person in a class of 100 without a partner. I have no friends. I will never make any friends. The rational voice inside of me kept trying to remind myself I am a 28-year old adult, surrounded by other, professional, responsible young adults, and this isn’t a popularity contest. It is just a session on how to crack a case method interview. Nonetheless, I couldn’t have felt any more isolated from my classmates at this moment. The first two days I got to meet many of them, but they were still acquaintances more than friends at this stage. Some faces were familiar, but most were not. I started to sweat. I began squirming in my seat, watching as others flocked to their new friends or turned to the person next to them. I eventually made the fateful decision to stay put as the rational side of me took hold. No one will make you get up, they see you’re on crutches. I waited and waited. I turned around frantically, watching people pair up at an alarming rate. I began to panic. I shifted in my seat as if I were a toddler who had lost his mother in a crowd, about ready to give up hope on ever finding a partner. I nearly knocked over my crutch in the process. “Excuse me, do you have a partner?” I turned around, and just like that I was saved. A blond-haired kid with dark-rimmed glasses sat down in the chair behind me. I’m pretty sure he knew the answer to his question. “I’m Brian.” “I’m Chris.” We shook hands. We tried the exercise and both failed miserably, however we talked for a few minutes and found we had a lot in common. Our parents lived one town away from each other in Connecticut. Soon we were instructed to switch partners, and another partner sat down, this time much quicker than before. As the course of the day went on, several people came over, and I found myself finally at ease. By the end of the day I got up out of that chair with all my might and headed back to the hotel where I was staying for the week. The crowd of strangers in the room that day had slowly turned into friendly faces, one by one. With each successive day, those faces became more and more familiar, and soon those familiar faces became great friends. The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Lead photo courtesy of Mitch Weiss Photography. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Chris Anselmo

Man Addresses His Dysferlinopathy

Dear Dysferlinopathy, I bet you thought you could break me. You came into my life after I graduated from college, an unwelcome visitor when I was just beginning to experience all the world had to offer. You took the dreams I had for my life and threw them to the ground. Spit on them. Buried them in the same dirt I would fall facedown on years later. You attacked my muscles slowly at first, just subtly enough for me to shrug it off as laziness and fatigue. I would work out hard, but you kept coming back harder. Eventually I would learn that the more I tried to preserve my muscle mass, the more you would destroy my muscle cells. You’re a cruel disease. You killed my cells when I was active. You killed my cells when I was inactive. Three years ago, you almost broke my spirit. Falling face-first onto the sidewalk for the first time – you almost had me. The gravel, the blood on my hands, the torn jeans — those were minor inconveniences compared to the emotional toll it took on me. I’ve never felt so down in my life. In your perverted world you took pleasure in my misfortune. You kept knocking me down over and over and over again, always making me fall right when I built my confidence back up to go outside and attempt to live a full life. You turned the city I live in and the city I love – Boston – into a prison. I can’t go for walks anymore. I can’t go to many places in this historic city because they have staircases. For the longest time you turned me into a hermit, building up my immunity to cabin fever. I can no longer be spontaneous, as you require that I plan out how to get from Point A to Point B in excruciating detail. Some days you are miserable to deal with. But in your ignorance and pride, you made a fatal mistake. You picked the wrong person. You have unlocked a determination in me I never knew existed. You thought my frustration, my sadness, my depression would cause me to withdraw from society and take away all the joy in my life. You failed. Instead, you’ve taught me the importance of relationships with friends and family. You have connected me to muscle disease researchers determined to reverse the effects you have had on my life. You may have forced me to see the world through a different lens, but that lens shows me the open doors, not the ones you have closed. It turns out you are the weak one. I mean, you don’t even have an official name – I have to call the disease different names to different people depending on the audience because you are so hard to diagnose. Miyoshi Myopathy. Limb-Girdle Muscular Dystrophy. Distal Muscular Dystrophy. Whatever you are called, your reign is coming to an end. You’ve given me a purpose in my life I never would have known. And that purpose is to make sure that you and all your muscle disease friends are defeated once and for all. Someday you will be the one that falls. Someday, when someone receives your diagnosis, you will be nothing more than a footnote in a medical record, treated and forgotten about. Dear Dysferlinopathy, You thought you could break me. But you failed. You will never touch my soul, the part of me that is unbreakable. I never would have known that without you coming into my life. For that, I thank you. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .